Patient involvement in decision-making:a cross-sectional study in a Malaysianprimary care clinic

Ranjini Ambigapathy, Yook Chin Chia, Chirk Jenn Ng

To cite: Ambigapathy R,Chia YC, Ng CJ. Patientinvolvement in decision-making: a cross-sectionalstudy in a Malaysian primarycare clinic. BMJ Open2016;6:e010063.doi:10.1136/bmjopen-2015-010063

▸ Prepublication history forthis paper is available online.To view these files pleasevisit the journal online(http://dx.doi.org/10.1136/bmjopen-2015-010063).

Received 30 September 2015Accepted 1 December 2015

Department of Primary CareMedicine, University ofMalaya Primary CareResearch Group (UMPCRG),Faculty of Medicine,University of Malaya, KualaLumpur, Malaysia

Correspondence toDr Ranjini Ambigapathy;ranjini_ambigapathy@yahoo.com

ABSTRACTObjective: Shared decision-making has beenadvocated as a useful model for patient management.In developing Asian countries such as Malaysia, thereis a common belief that patients prefer a passive role inclinical consultation. As such, the objective of thisstudy was to determine Malaysian patients’ rolepreference in decision-making and the associatedfactors.Design: A cross-sectional study.Setting: Study was conducted at an urban primarycare clinic in Malaysia in 2012.Participants: Patients aged >21 years were chosenusing systematic random sampling.Methods: Consenting patients answered a self-administered questionnaire, which includeddemographic data and their preferred and actual rolebefore and after consultation. Doctors were asked todetermine patients’ role preference. The ControlPreference Scale was used to assess patients’ rolepreference.Primary outcome: Prevalence of patients’ preferredrole in decision-making.Secondary outcomes: (1) Actual role played by thepatient in decision-making. (2) Sociodemographicfactors associated with patients’ preferred role indecision-making. (3) Doctors’ perception of patients’involvement in decision-making.Results: The response rate was 95.1% (470/494).Shared decision-making was preferred by 51.9% ofpatients, followed by passive (26.3%) and active(21.8%) roles in decision-making. Higher householdincome was significantly associated with autonomousrole preference (p=0.018). Doctors’ perception did notconcur with patients’ preferred role. Among patientswhom doctors perceived to prefer a passive role,73.5% preferred an autonomous role (p=0.900,κ=0.006).Conclusions: The majority of patients attending theprimary care clinic preferred and played anautonomous role in decision-making. Doctorsunderestimated patients’ preference to play anautonomous role.

INTRODUCTIONSeveral studies have shown that patientinvolvement in decision-making is poor

worldwide.1–4 The Department of Health inthe UK has come up with the policy‘Liberating the NHS: no decision aboutme, without me’ to increase patient involve-ment in decisions about their care.5

The Affordable Care Act in the USA hasincorporated shared decision-making into thePublic Health Services Act to improvethe quality of care provided to patients.6

There is an increasing emphasis on patientinvolvement in healthcare decision-making,and patient involvement may have animpact on treatment adherence and clinicaloutcomes.7

The common treatment decision-makingmodels include paternalistic, professional-as-agent, informed decision-making and shareddecision-making models. Patients play apassive role in the paternalistic model. In theprofessional-as-agent model, the doctor makesthe decision for the patient assuming he/she

Strengths and limitations of this study

▪ This study is one of the few performed in Asialooking specifically at patients’ preferred role indecision-making.

▪ Systematic random sampling was used toprovide a good representation of the clinic atten-dees, which makes the results generalisable tothe study population.

▪ This study was conducted in a primary careclinic based in a teaching hospital located in anurban area. The findings may not be representa-tive of the general population in the community.

▪ The questionnaire was given to patients anddoctors before consultation, which may haveresulted in a change in the doctors’ behaviourduring the consultation.

▪ Although face and content validation was per-formed for the Control Preference Scale, reliabil-ity testing and further validation usingconvergent or discriminatory validation methodsmay be necessary to determine the validity of thequestionnaire.

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had the same preferences as the patient, thus making thedoctor the sole decision-maker. The informed decision-making model incorporates the idea of informationsharing with the patient who makes the decision solely atthe end. In the shared decision-making model, both thepatient and the doctor take turns to be involved in thedecision-making process and agree to the treatment deci-sion. In this case, both are responsible for the finaldecision.3

However, patient involvement in decision-makingvaries worldwide. In Europe, a large population-basedstudy revealed that 51% of patients preferred shareddecision-making, followed by doctors as the maindecision-makers (26%) and patients having a primaryrole in decision-making (23%).8 In this study, amongpatients who had had a consultation, only slightly morethan half of them participated in the consultation anddecision-making. This suggests that many Europeanpatients wanted a more autonomous role in decision-making and there was a gap between patients’ role pref-erence and their experience.8 However, not all patientswish to be involved in the decision-making process. In2002, it was found in the US population-based GeneralSocial Survey that 52% of participants preferred to leavethe final decision to their doctors. However, the majority(96%) of participants wanted to discuss options andshare their opinions about clinical management withdoctors.9 This component of decision-making wasvalued by patients. Briel et al10 conducted a study inSwitzerland to determine patients’ decisional role prefer-ence in the context of an acute illness. In this study, themajority (66%) of patients preferred a doctor-centredapproach. There might be differences in role preferencein patients with different types and duration of illnesses.Patient involvement in decision-making also varieddepending on the different issues in management.Between 2007 and 2008, a study carried out in theNetherlands showed that patients who were referred fordiagnostic purposes had less involvement in choosingtheir healthcare provider than those who were referredfor treatment.11

In Asia, a previous study conducted in Japan in 1996suggested that Japanese played a passive role during con-sultations. This study showed that older patients(≥65 years of age) trusted their doctors to make thedecision. Only 19.6% of patients made the decision ontheir own to undergo a coronary angiography proced-ure.12 A more recent study was conducted in 2004 todetermine the role preference among 134 diabeticpatients attending a single outpatient clinic in Kyotowho were randomly assigned to one of three case studyvignettes (pneumonia, gangrene or cancer). The major-ity preferred a collaborative role (71%), followed bypassive (17%) and active (12%) roles. Those whoanswered the cancer vignettes were less likely to preferan active role and were more likely to prefer familyinvolvement in decision-making than those who did notrespond to the cancer vignettes. This suggests that

patients who previously preferred a more paternalisticapproach want to play a more active role in decision-making.13 Malaysia is a multi-ethnic, multi-cultural,middle-income developing country in Asia. Althoughthe population is becoming more affluent, they stillshare common Asian values. There have been no pub-lished studies on patients’ role preference in decision-making in the Malaysian primary care setting.14 Thus,this study was performed to determine patients’ rolepreference in decision-making and the factors associatedwith it.

OBJECTIVESPrimary objectiveTo determine patients’ preferred role in decision-making in the primary care clinic at the University ofMalaya Medical Centre.

Secondary objectives1. To determine the patient’s actual role in decision-

making during consultations.2. To determine the association between patients’ pre-

ferred role in decision-making and their sociodemo-graphic factors.

3. To determine the association between doctors’ per-ceptions of patients’ role preference and patients’actual role preference in decision-making (ie,whether the doctors were able to identify patients’actual role in decision-making).

Hypothesis1. Patients attending the primary care clinic preferred a

passive role in decision-making.2. Patients are passively involved during the

consultation.3. There is an association between patients’ sociodemo-

graphic factors (age, gender, ethnicity, marital status,education level, occupation, total household incomeand perceived health status) and the doctors’ andpatients’ preferred role in decision-making.

4. There is no association between doctors’ perceptionof patients’ role preference and patients’ actual rolepreference in decision-making.

METHODSThis was a descriptive cross-sectional study conducted atan academic primary care clinic in Kuala Lumpur,Malaysia in September 2012. All patients above 21 yearsof age attending the clinic during this 1-month periodwere eligible to be included in the study. All doctorsworking in the clinic during this study period consentedto participate. Patients with acute psychosis, dementia ormental disability and those who were unable to under-stand English, Malay, Chinese or Tamil were excluded.A sample size of 460 patients was required to partici-

pate in this study. This was calculated using the Kishformula, based on an estimated 51% of patients who

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wish to be involved in decision-making with the CI of95% and ±5% precision, taking into consideration 20%of patients refusing to participate in the study. The esti-mated prevalence of patients who prefer shareddecision-making (51%) was based on the prevalencefound in a study performed in Europe in 2002.8 Basedon the formula, a sample size of 385 patients wasneeded. After addition of an estimated 20% for non-respondents, an additional 75 participants was added,making the final sample size 460.The patient-preferred decisional role was measured

using the Control Preference Scale (CPS) question-naire.15 This determines ‘the degree of control the indi-vidual wants to assume when decisions are being madeabout medical treatment’. The CPS was used in four sec-tions of the questionnaire (figure 1). Face and contentvalidation of the questionnaire was conducted. Face val-idation was performed by three non-healthcare person-nel, and content validation by three experts in this field.The questionnaire was translated into Malay, Chineseand Tamil, and back-translated to English, by independ-ent individuals. All four versions of the questionnairewere tested in a pilot study with 30 individuals who hadno difficulty in understanding and answering all thequestions.During data collection, the questionnaire was given to

patients before and after consultation with the doctor. Thepre-consultation questionnaire consisted of sociodemo-graphic data and two questions to determine the patient’srole preference (question 1) and family involvement(question 2) in decision-making; the post-consultationquestionnaire had one question to determine the patient’sactual role during consultation (question 3). The doctorscompleted one questionnaire after consultation to deter-mine their perception of patients’ role preference (ques-tion 4).Eligible participants were identified at the clinic triage

counter. The statistical software Epical 2000 was used toselect a single-digit number from 0 to 9 for the day. Allpatients whose last number in their four-digit queuenumber corresponded to the chosen number for theday were approached to participate in the study (eg, ifthe chosen number for the day was 5, patients withqueue numbers 1005, 1015, 1025, etc were invited).Patients who fulfilled the inclusion criteria were giventhe patient information sheet to read. Once they hadagreed to participate, written consent was taken, andthey were asked to complete the pre-consultation ques-tionnaire. After consultation, the doctor and the patienteach completed a separate questionnaire.The dependent variable was the patient’s role prefer-

ence in decision-making. The independent variableswere age, sex, ethnicity, socioeconomic status, educationlevel and doctor’s qualification. Categorical variableswere summarised as percentages, and continuous vari-ables as mean and SD or median. To test the associationbetween variables, bivariate analysis of categorical vari-ables was performed using χ2. κ was used to determine

agreement between doctors’ perceived patients’ rolepreference and patients’ preferred role. Ethics approvalwas obtained from the University of Malaya EthicsCommittee (reference number 830.16).

RESULTSA total of 494 patients were approached, of which 470provided their consent—a response rate of 95.1%. Twopatients who agreed to participate and completed thequestionnaire did not return after the consultation toanswer the post-consultation questionnaire. These twopatients were excluded in the calculation of prevalenceof patients’ role preference in decision-making afterconsultation, but were included in the other analyses.Sociodemographic characteristics of the patients,

reasons for seeing a doctor, duration of disease anddoctors’ qualifications are shown in table 1. The medianduration of a patient’s illness was 180 days. The highestnumber of patients was seen by family medicine traineeswith <10 years of practice. Table 2 shows the associationbetween patients’ sociodemographic characteristics andtheir preferred role in decision-making. Only totalhousehold income was associated with patients’ rolepreference in decision-making, where patients withlower household income (≤MYR999 (999 MalaysianRinggits)) were more likely to prefer a passive role indecision-making.The study involved 47 doctors. The median age of the

doctors was 33 years ranging from 28 to 61 years and themajority were female, Malay, had less than 10 years ofpractice, and did not have a postgraduate qualification.Most were 3rd and 4th year postgraduate family medi-cine trainees (MMed in Family Medicine) (table 3).The patients’ role preference in decision-making and

their actual role during the consultation are shown intable 4. Nearly three-quarters of the patients preferredan active or shared decision-making role before consult-ation, but only 70% felt that they played this role duringthe consultation. The doctors perceived that most of thepatients preferred either a shared role (39.6%) or apassive role (39.4%) in decision-making. Almost half ofthe patients (49.1%) preferred to have shared decision-making together with their family.Table 5 shows that there was no significant association

between doctors’ perception of patients’ preferred deci-sional role and patients’ preferred role in decision-making. The κ value was low, indicating that there was alack of agreement between patients’ role preference anddoctors’ perception of patients’ role preference indecision-making.

DISCUSSION AND CONCLUSIONDiscussionThe three key findings of this study are (1) the majorityof patients preferred an autonomous (active andshared) role in decision-making, (2) only total house-hold income was associated with patients’ role

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preference and (3) there was a gap between patients’expectation and doctors’ perception of patients’ rolepreference.More than half of the patients preferred shared

decision-making (before consultation), but fewer thanthat (45.3%) felt that the decision was shared duringthe consultation. This finding is very similar to apopulation-based study conducted in Europe, whichfound that 51% of respondents preferred shareddecision-making.8 It was found in another population-based study conducted in the USA in 2005 that 52% ofpatients preferred to leave decision-making to their phy-sicians.9 It was found in a study carried out in Japan that71% of patients preferred shared decision-making.13

The authors postulated that the high preference forshared decision-making was due to the study populationwho were diabetic with relatively good adherence totreatment. Therefore, they were more likely to beactively involved in the management of their illness.7 Incontrast, a study conducted in Switzerland showed thattwo-thirds of the patients preferred a doctor-centredapproach.10 In that study, the participants were adultswith acute respiratory tract infection. These two studiesindicate that the characteristics of the presenting illness

are important in determining patients’ decisional rolepreference. However, healthcare providers should notassume that they can predict a patient’s role preference.They should assess each patient’s role preference indi-vidually and tailor patient care accordingly.There was a significant association between total

household income and patients’ preferred decisionalrole. Patients who had a lower total household incomeof less than MYR1000 preferred a more passive role indecision-making than those from a higher total house-hold income group. This was similar to the finding byChewning and Sleath16 from the USA in 1996, wherepatients from a higher income group preferred an activerole in decision-making. Patients with a lower totalhousehold income often have limited healthcare accessand options, and they tend to believe that the doctorwould be the best person to decide for them aftertaking into consideration the cost of treatment.Conversely, the higher income groups have moreoptions to choose from, as cost would not be an issuefor them.No significant association was found between doctors’

perceptions of patients’ preferred role in decision-making and patients’ actual role preference. This is

Figure 1 Questionnaire used for the study.

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similar to a study conducted by Cox et al17 in the UK,where it was found that general practitioners’ percep-tions of patients’ role preference in decision-makingwere inaccurate in most cases. Doctors tend to underesti-mate patients’ preferred level of involvement. It wasnoted that the general practitioners accurately assessed

Table 1 Sociodemographic characteristics of the patients

Characteristic Total patients (n=470)

Age (years)

< 35 98 (20.8)

36–54 156 (33.2)

≥55 216 (46.0)

Sex

Male 199 (42.3)

Female 271 (57.7)

Ethnicity

Malay 171 (36.4)

Chinese 153 (32.6)

Indian 116 (24.7)

Others 30 (6.3)

Marital status

Single 86 (18.3)

Married 326 (69.4)

Divorced/widow/widower 58 (12.3)

Occupation

White collar job 115 (24.5)

Blue collar job 89 (18.9)

Retired 136 (28.9)

Unemployed 30 (6.4)

Housewife 100 (21.3)

Total household income (MYR)

≤999 69 (14.7)

1000–2999 190 (40.4)

3000–4999 107 (22.8)

≥5000 104 (22.1)

Educational level

No formal/primary 97 (20.6)

Secondary 197 (41.9)

Technical/vocational/diploma 73 (15.5)

Tertiary 103 (22.0)

Disease-associated factors

Total respondents

(n=470)

Reason for seeing the doctor

Symptoms, complaints 268 (57.0)

Diagnosis, screening,

prevention

34 (7.2)

Treatment, procedures,

medication

0 (0)

Test results 0 (0)

Diagnoses, disease 168 (35.8)

Duration of illness (days), median

(range)

180 (1–12 775)

Number of patients seen by doctors according to the

doctors’ qualification

Masters year 1 115 (24.5)

Masters year 2 73 (15.5)

Masters year 3 149 (31.7)

Masters year 4 87 (18.5)

Lecturer 4 (0.9)

Service medical officer 42 (8.9)

Number of patients seen by doctors according to the

number of years of doctors’ practice

<10 348 (74.0)

10–19 80 (17.0)

≥20 42 (8.9)

Unless otherwise indicated, values are n (%).MYR, Malaysian Ringgit.

Table 2 Association between patients’ sociodemographic

characteristics/number of years of doctors’ practice and

patients’ preferred role in decision-making

Characteristic

Passive*

(n=123)

Autonomous†

(n=347)

p

Value χ2

Age (years)

<35 24 (24.5) 74 (75.5) 0.762 0.543

36–54 39 (25.0) 117 (75.0)

≥55 60 (27.8) 156 (72.2)

Sex

Female 74 (27.3) 197 (72.7) 0.513 0.428

Male 49 (24.6) 150 (75.4)

Ethnicity

Malay 47 (27.5) 124 (72.5) 0.317 3.529

Chinese 32 (20.9) 121 (79.1)

Indian 35 (30.2) 81 (69.8)

Other 9 (30.0) 21 (70.0)

Marital status

Single 24 (27.9) 62 (72.1) 0.135 4.008

Married 78 (23.9) 248 (76.1)

Divorced/

widow/widower

21 (36.2) 37(63.8)

Occupation‡

White collar job 33 (28.7) 82 (71.3) 0.794 1.683

Blue collar job 20 (22.5) 69 (77.5)

Retired 33 (24.3) 103 (75.7)

Unemployed 8 (26.7) 22 (73.3)

Housewife 29 (29.0) 71 (71.0)

Total household income (MYR)

≤999 27 (39.1) 42 (60.9) 0.018 10.017

1000–2999 53 (27.9) 137 (72.1)

3000–4999 21 (19.6) 86 (80.4)

≥5000 22 (21.2) 82 (78.8)

Education level

No formal/

primary

27 (27.8) 70 (72.2) 0.532 2.198

Secondary 54 (27.4) 143 (72.6)

Technical/

vocational/

diploma

14 (19.2) 59 (80.8)

Tertiary 28 (27.2) 75 (72.8)

Number of years of practice of doctors

<10 85 (24.2) 263 (75.6) 0.348 2.114

10–19 25 (31.3) 55 (68.8)

≥20 13 (31.0) 29 (69.0)

Values are n (%).Bold indicates significance.*Passive: passive role preference (options 4 and 5; see fig 1).†Autonomous: shared and active role preference (options 1–3;see fig 1).‡Occupation of the patients was categorised based on theMalaysian Standard Classification of Occupations 2008 by theMinistry of Human Resources, Malaysia.MYR, Malaysian Ringgit.

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patients’ preferences in only 32% of the consultations.This study showed that most of the patients preferred

to share their decision with their family (49.1%). Thiswas consistent with the study conducted in Japan, where42% preferred family involvement in the pneumoniavignette, 41% for the gangrene vignette and 70% for

the cancer vignette. The Japanese culture stresses theinterconnectedness of a person, especially within thefamily. In Japan, patients may require cooperation oftheir families for the fulfilment of their treatment deci-sions. Hospital admission may impose heavy workloadson their family; as such, the family’s consent and com-mitment are important considerations for Japanesepatients.13 The Malaysian culture may be similar to theJapanese culture.This study is one of the few studies in Asia looking spe-

cifically at patients’ preferred role in decision-making.Systematic random sampling was used to provide a goodrepresentation of the clinic attendees, which makes theresults generalisable to the study population. However,there are a few limitations of this study. First, it wasconducted in a primary care clinic based in a teachinghospital located in an urban area. The findings maytherefore not be representative of the general popula-tion in the community. Future surveys involving a largerpopulation in the community will provide the true preva-lence of patients’ role preference in Malaysia. Second,the questionnaire was given to patients and doctorsbefore consultation. This may have resulted in a changein the doctors’ behaviour during the consultation.However, there was no association between the patients’role preference and the doctors’ perception of patients’role preference. This implies that the agreement inthe usual clinical setting may be even lower without theprompting of these questions. Finally, although face andcontent validation was conducted for the CPS, furthervalidation using convergent or discriminatory validationmethods may be necessary to determine the validity ofthe questionnaire. However, the patients did not expressany difficulty in understanding and answering the ques-tions during the pilot and actual study.This study challenges the assumption that Asian

patients prefer a passive role in healthcare decision-making. Further qualitative and quantitative studiesshould be conducted with patients and doctors to findways to actively engage patients in clinical consultations.In addition, more emphasis should be given to trainhealthcare professionals in acquiring skills to supportpatients in making an informed decision. This may beachieved by incorporating the shared decision-making

Table 3 Sociodemographic characteristics of the doctors

Characteristic

Total respondents

(n=47)

Age (years)

Mean±SD 35.1±7.2

Range 28–61

Median 33

Sex

Male 11 (23.4)

Female 36 (76.6)

Ethnicity

Malay 29 (61.7)

Chinese 4 (8.5)

Indian 8 (17.0)

Others 6 (12.8)

Number of years of practice

Mean±SD 10.1±6.8

Range 4–35

Median 8

Postgraduate qualification

Yes 4 (8.5)

No 43 (91.5)

Current working position

Masters year 1 10 (21.3)

Masters year 2 6 (12.8)

Masters year 3 12 (25.5)

Masters year 4 12 (25.5)

Lecturer 3 (6.4)

Service medical officer 4 (8.5)

Number of years of practice

<10 33 (70.2)

10–19 10 (21.3)

≥20 4 (8.5)

Range 4–35

Unless otherwise indicated, values are n (%).

Table 5 Association between patients’ role preference

(before consultation) and doctor’s perceived patients’ role

preference in decision-making (during consultation)

Patients’ role preference

p ValuePassive Autonomous Total

Doctor’s perception of patients’ role preference

Passive 49 (26.5) 136 (73.5) 185

(100.0)

0.900

Autonomous 74 (26.0) 211 (74.0) 285

(100.0)

Total 123 (26.2) 347 (73.8)

κ=0.006, p=0.900.

Table 4 Patients’ preferred role in decision-making

Pre-consultation Post-consultation

(n=468)

How do you prefer

to make a decision

during

consultation?

n (%)

How did you make

your decision during

consultation?

Autonomous

Active 102 (21.8) 113 (24.1)

Shared 243 (51.9) 212 (45.3)

Passive 123 (26.3) 143 (30.6)

Total 468 (100.0) 468 (100.0)

Values are n (%).Active, options 1 and 2; Shared, option 3; Passive, options 4 and 5.

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model into the undergraduate and the postgraduate cur-ricula across all disciplines.

CONCLUSIONThe majority of patients in this study preferred anautonomous role, and a high proportion of themwanted family involvement in decision-making. There isstill a gap between patients’ expectation and doctors’perception of patients’ role preference. This study hasshed light on patients’ role preference and its associatedfactors in the context of a primary care setting inMalaysia. It provides evidence that physicians mustactively involve patients in decision-making in their dailyclinical practice.

Acknowledgements We would like to thank Associate Professor KaruthanChinna for statistical support, Lee Yew Kong for valuable comments, and theUniversity of Malaya for funding this research (reference number P0034/2011A).

Contributors RA, YCC and CJN contributed substantially to the conception,design, analysis and interpretation of data for the study. RA collected the dataand drafted the manuscript. YCC and CJN revised it critically for importantintellectual content and approved the final version to be published. RA, YCCand CJN agreed to be accountable for all aspects of the work in ensuring thatquestions related to the accuracy or integrity of any part of the work areappropriately investigated and resolved.

Funding This study was supported by a University of Malaya Research Grant(UMRG) (grant number: P0034/2011A).

Competing interests None declared.

Ethics approval Medical Ethics Committee, University Malaya Medical Centre.

Provenance and peer review Not commissioned; externally peer reviewed.

Data sharing statement No additional data are available.

Open Access This is an Open Access article distributed in accordance withthe Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license,which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, providedthe original work is properly cited and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/

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